Recently I was contacted by a family friend who was looking to support someone whose child had just been diagnosed with T1D. This was the letter I chose to write the new T1D parent:
Dear new T1D parent,
I don’t remember what it was like to be diagnosed, but I know that it was a day that changed the lives of myself and my family. I was diagnosed at 18 months old, almost the same age as your child, and diabetes has affected my life in so many positive ways, despite the battles that I must fight with it every day. Being diagnosed so young, however, and having such a strong support network in my family has made these battles so much easier. I’m writing you this letter for a couple reasons, the first is to invite you to the T1D community, and the second is to let you know about some of the things that I went through growing up that your child and your family may experience.
I’ll start with a short introduction since we don’t know each other. My name is Ellie, I am 21 years old and I grew up in Toronto, but now I study neuroscience in British Columbia. I was diagnosed with T1D when I was 18 months old and no one else in my immediate family is diabetic. I have worked/volunteered with three diabetes organizations: Diabetes Canada, Juvenile Diabetes Research Foundation, and Connected in Motion. All three of these organizations have been incredible for how I perceive my diabetes and myself as a person living with T1D. If there was a cure for diabetes I would take it in a heartbeat, even though many of my friends with diabetes would not.
The T1D community is amazing, full of passionate individuals whose goals are to normalize living with T1D and build a support network of people who are all going through the same daily struggles. As your child gets older, I strongly recommend sending him to one of the Diabetes Canada D-Camps. I went to Camp Huronda for many years as both a camper and later working as a staff member. My experiences at Camp Huronda were so formative. They gave me a healthy perspective on my diabetes and role models with diabetes. Being surrounded by other people who lived with similar experiences to myself and being able to use these people as supports throughout the year gave me pride in my diabetes. Camps are not for everyone though, so the take-home message is that providing opportunities for your child to make connections with other people living with T1D may become an important resource for them.
I am incredibly grateful to my family and the way that diabetes management was implemented into my development. Just like my friends became night-toilet trained before they went to their first sleepovers, I learned how to give my first needles in case my insulin pump stopped working before I went on my first overnight school trip. My family normalized my diabetes and my learning to become independent at managing my diabetes. I am so grateful for this and for their support through my entire childhood and now as an adult.
I also developed an interest in understanding diabetes and biology. My family was supportive of my interest in diabetes as a diabetic, but also as a human and when I changed paths and became interested in neuroscience, my family was equally supportive. As your child grows up, you may notice that people see their diabetes before they see them as a human. Diabetes can be an important part of their identity but it doesn’t have to be. Let them take the lead on how big of a role diabetes plays in the non-medical parts of their life, and be aware that other people may try to impose it on them.
Finally, diabetes is a daily struggle. There are so many new technologies coming out that make managing it easier, but it is an illness that we work with every day it’s not easy, but because of that the communities that form around it for both you and your child can be so strong. My diabetes is an integral part of my identity and I would not trade my life thus far for one without diabetes.
Do not hesitate to contact me if you ever have any questions or want to chat,